Shari's Ramblings a Dystonia Diary

Ramblings from an ordinary nut case

Friday, August 14, 2009

I have a follower today! Yea some one heard me!

a first. somehow I have 2 accts. One on Minter54@gmail.com so go to both. When i switched from mac to PC it messed it up. way over my head! Got some interesting facts today that about 10 percent go away if under 6 months. after that its permanent. how wonderful! I am about 1 month or 6 wks into this so I can only start praying that I will be one of the 10 percent. Still have to do the EMG and the MRI. Neuro thought I should be knocked out for both. I can tell when Im pulling the large muscles in my neck stick out. I suppose those will get the Botox. I hear it doesnt always work because your body builds up antibodies to it. That true anyone? I miss the stillness of reading. resting, watching TV. even typing I have to look thru my right eye. I used to be able to sit perfectly still for hours and read. those are the things I miss most. Most everything else I can do. Got stared at for the 1st time at the nail salon. That was hard...My future! Time for bed ..I dread it cause it hard to get to sleep when you are always moving! Thanks for reading!

2 good days for me. Had fun shopping today with my niece and sister. her big 17 is coming up. and yesterday I messed with the blog. Keeping busy and upright is the key. No sitting and lying down. Still trying to adapt to the new PC. Im supposed to go out tomorrow with by GFriends but have forgotten where. I hope they call to remind me. They havent seen me since I told them about the dystonia. I hope they dont get all mushy. Its hard on me, trying to keep it together. Make me laugh instead! Kipper had a good meeting with the neuro Dr and he thinks Im on the right track for my treatment but includes a lot of needles! I hope I can take it but it will give me some relief for 2-3 months. Then back again. I may time them so I can take some trips in the fall. My sister says I dont get the whole blog thing and am supposed to be more positive. I was going to tease her and my daughter and take a picture of all the butterflies lying in my pool but she didnt think that was funny. She says Im different. We are just going thru different things. Yes I can spell and punctuate but Rambling is the actual point... actually she is the one who cant spell as I pointed out on her first blog...mine is on purpose! LOL Ive always been sarcastic! thats where my daughter gets it. Kipp is too. we have a different sense of humor. But We think we are funny.so thats what matters! Hope everyone who reads this has a good weekend including me...thats funny cause no one reads this but whatever:)

MRI was a bust. 4 valium still didnt stop shaking. hafta come back while the Dr is there for total knockout. Im told them that , they didnt believe me. Oh well I did learn to stay on top of my meds or I will be having a bad day! Laid in bed til I decided not to have a pitty party and get up and do something. Went to lunch at Mac Grill cause I hadnt eaten much lately. Lotsa meds make for a great weight loss plan. Should have done this instead of Jenny Craig. This is faster. Averaging a pound a day. Saw my crazy boys today and learned all the Monster trucks. they are growing so fast. They wont be that interested in Nana that much longer.Off with school and friends... birthday parties. Sports, they get so busy. Im reading a book thats depressing me about Dystonia. Kipp says I have to work at the depression part taking over. I think thats why they gave me Prozac. But I have to know whats ahead. I cant sit and wonder. Kipp is having lunch with the head of Neurosurgery at ORMC tomorrow. he wants to create a team of experts. he's so funny. Mr take charge. Thats what men are good at. I dont think he can accept the fact there's no cure. But it nice to have some one on the case when I get sick of hearing and dealing with it. I found out 3 days before my 55th bday. Happy Birthday to me! But I have been dealing with neck pain for 5 years so it was already there. Surprise! what is Dystonia? I never heard of it! I get the craziest opinions on where I got it. My neck pillow...physical therapy , something I take like my thyroid meds. etc. everyone's any expert except the Dr. who blew me off when I brought it up. I googled and there it was! so I found a Neuro and he knew! finally Im not Crazy!!! I have to fight the feelings that my life is over . My life as I knew it is... Meanwhile life goes on. I look at everyone now, going about their lives. i just hope no one is looking at me!

Wednesday, August 12, 2009

MRI day, I tried to get out of it but they tracked me down. House is ready, cleaned cause he wont do it. Dont want to come home to a mess. Such a girl thing! Huh? This is just sinking in that my head will shake forever. I wanted to be the fun healthy Gramma who made it to all the weddings and danced. I dont think that will happen now. I was so young when Joey was born! No one else has any grandkids yet. Ive always told Kipp I was in a hurry to go everywhere and get everything done. He thought I was crazy. Now I know why. My brain was telling me things. My Mom "visited" me about a month ago and said she was waiting for me. God I hope not! I have too much to do and too many babies to rock! She will just have to wait... Not many people can pinpoint the exact day their lives changed forever. This could be one of them. I can name them all...Jan 14, 1973 The day I met Kipp...... May 8th, 1978 the day I found out I was pregnant with Kristin and Jan. 6th, 1980...when I was pregnant with Lindsay...and the days the grandkids were born. Others too , the days my parents died..etc, calendar of my life. Kipp is painting a house today for the Primrose house in Orlando. Thats funny cause he cant paint. He doesnt around here anyways. Someone must have twisted his arm. Sue is bugging me to mess with my homepage so I will try again til Kipp gets home to shower. I dont really care about that part. The writing things down means more. Gives me someone to talk to, dont want to bore people with it all! Cya later

About Me

Shari M. is 55 (gasp) married to the same man since 1974. I have 2 daughters and 4 1/2 grandkids. went to school in Gainesville Fl Go Gators! the only other place I have ever lived. How sad. cant wait for football season. Gators will rock this year! Always looking for someplace new to travel too!